Anyone with experience of "emergency" Neulasta boosters? What to expect? + How to deal with emotion

ender
ender Member Posts: 167
in Breast Cancer #1
Hi everyone,

Today I was hit with some bad news. After getting my first chemo of TC 6 days ago, my white blood count was very low. My MO had hoped that I would not need any Neulasta shots. Unfortunately, I do. As I was not given one "just in case", I now must get one every day for at least three days. I must also take antibiotics. My MO was also concerned about rashes on my skin, likely from the Taxotere.

So here I am, with some fresh Neulasta in me and a little down for the first time since my diagnosis really. My husband is the sunshine of my life, and it is impossible not to smile when he is here. Tomorrow, he must go to a work meeting across the country. He will be gone little over 24 hours, but I fear going to my MO tomorrow by myself. I worry that I will get emotional, somehow by virtue of being without him. I never get emotional in public. Not even in the beginning of all this, when I was both pregnant and diagnosed with breast cancer did I cry to any doctor, nor barely to anyone. I really don't want to. So my first question of this post is if anyone has tips on how to stay composed when you have a moment of weakness?

When I was first diagnosed, I kindly rejected all offers of support groups and the likes in my area. I am not much for unsolicited group hugs from strangers and not much for getting sympathy from anybody in general. I like to give it, not receive it. However, with this forum I have found great information, and information is what works for me - as support. I am so grateful that each time I pose a question - so many of you jump in there.

My second question of this post is if anyone has experience with the series of "emergency" neulasta shots Im getting? I have read about joint and bone pain from those of you getting "regular" neulasta shots, but is it different or worse with this series of shots?

Eva

Comments

  • camul
    camul Member Posts: 2,537
    #2
    I have only gotten Nupogen
    I have only gotten Nupogen shots when my counts drop really low, and then it has been 2 days in a row. The first time, I also was put on an antibiotic in case a low grade infection was contributing to the low counts. I had some leg pain, so MO suggested Claritin and I took that before each of the next shots and for the day following and it really helped with the leg pain. I have never been given the shots on a "just in case" basis.
    It brought my counts up higher than they were before I started chemo. Talk to your doctor about taking something to relieve any side effects.
    ~Carol
  • ender
    ender Member Posts: 167
    #3
    camul said:

    I have only gotten Nupogen
    I have only gotten Nupogen shots when my counts drop really low, and then it has been 2 days in a row. The first time, I also was put on an antibiotic in case a low grade infection was contributing to the low counts. I had some leg pain, so MO suggested Claritin and I took that before each of the next shots and for the day following and it really helped with the leg pain. I have never been given the shots on a "just in case" basis.
    It brought my counts up higher than they were before I started chemo. Talk to your doctor about taking something to relieve any side effects.
    ~Carol

    Thank you, Carol!
    Perhaps I
    Thank you, Carol!

    Perhaps I misspoke and it is in fact Nupogen shots that I am getting. I thought that the Neulasta shot was given at the time of chemo to prevent your blood count from dropping? That is what I call "just in case" ;)

    Again, many thanks for your kind reply.

    Eva
  • MAJW
    MAJW Member Posts: 2,510 Member
    #4
    ender said:

    Thank you, Carol!
    Perhaps I
    Thank you, Carol!

    Perhaps I misspoke and it is in fact Nupogen shots that I am getting. I thought that the Neulasta shot was given at the time of chemo to prevent your blood count from dropping? That is what I call "just in case" ;)

    Again, many thanks for your kind reply.

    Eva

    You...
    You were pregnant when diagnosed??? I must have missed that in a previous post....your profile states you had eggs harvested....
    Since your husband can't go with you, take another family member or friend with you for your onc visit....two sets of ears better than one...

    I was given a Nuelasta injection with every infusion....24 hrs after each one... My onc said he would rather be proactive and prevent low counts..my blood work was always perfect...
  • ender
    ender Member Posts: 167
    #5
    MAJW said:

    You...
    You were pregnant when diagnosed??? I must have missed that in a previous post....your profile states you had eggs harvested....
    Since your husband can't go with you, take another family member or friend with you for your onc visit....two sets of ears better than one...

    I was given a Nuelasta injection with every infusion....24 hrs after each one... My onc said he would rather be proactive and prevent low counts..my blood work was always perfect...

    Hi Majw!
    Thanks for your
    Hi Majw!

    Thanks for your reply!

    Yes, I was pregnant. A happy and most wanted pregnancy. Unfortunately, the baby misscarried before we had a chance to think about how to manage treatment during pregnancy. I found out about the pregnancy a few weeks after my diagnosis. We were trying to get pregnant, but when I took a test right when I was diagnosed it was negative. Perhaps too soon to register. When I was having all kinds of symptoms from the pregnancy, ,we just attributed it to my cancer diagnosis at first. Then we learned of the pregnancy but the same day learned that I had an empty yolksac and needed the D&C. So I went from a D&C procedure to remove the fetus right in to breast surgery and then surgery to harvest eggs so that we might have children sometime in the future. I guess I did not think of the D&C as part of the cancer treatment when I wrote my profile. While the lost baby hurts, I feel so lucky that I had a chance to harvest the eggs. I learned during this time that my fertility doctor also had another patient, she too 29 years old. She had just been diagnosed with a more advanced breast cancer, had no partner with whom to make embryoes for the future and did not have the luxury of delaying treatment for a few weeks to even harvest eggs.

    Im pretty sure I will be given the Nuelasta shot in a proactive way for my coming chemos. This emergency shot business is a result of me not wanting any drugs I do not absolutely need. My MO respected that and said I would perhaps not need Neulasta. Well, I did :(

    Thanks for listening, and thanks for your reply!

    Eva
  • pinklady2011
    pinklady2011 Member Posts: 1
    #6
    ender said:

    Hi Majw!
    Thanks for your
    Hi Majw!

    Thanks for your reply!

    Yes, I was pregnant. A happy and most wanted pregnancy. Unfortunately, the baby misscarried before we had a chance to think about how to manage treatment during pregnancy. I found out about the pregnancy a few weeks after my diagnosis. We were trying to get pregnant, but when I took a test right when I was diagnosed it was negative. Perhaps too soon to register. When I was having all kinds of symptoms from the pregnancy, ,we just attributed it to my cancer diagnosis at first. Then we learned of the pregnancy but the same day learned that I had an empty yolksac and needed the D&C. So I went from a D&C procedure to remove the fetus right in to breast surgery and then surgery to harvest eggs so that we might have children sometime in the future. I guess I did not think of the D&C as part of the cancer treatment when I wrote my profile. While the lost baby hurts, I feel so lucky that I had a chance to harvest the eggs. I learned during this time that my fertility doctor also had another patient, she too 29 years old. She had just been diagnosed with a more advanced breast cancer, had no partner with whom to make embryoes for the future and did not have the luxury of delaying treatment for a few weeks to even harvest eggs.

    Im pretty sure I will be given the Nuelasta shot in a proactive way for my coming chemos. This emergency shot business is a result of me not wanting any drugs I do not absolutely need. My MO respected that and said I would perhaps not need Neulasta. Well, I did :(

    Thanks for listening, and thanks for your reply!

    Eva

    Neulasta
    I had my first Neulasta on May 9, 2011 the day after my 3rd chemo. I thought I was home free until May 16, 2011. I work up with excrutiating pain in my lower and upper back and chest. Shortness of breath..I felt like I had been run over by a MAC truck over and over again. I went into ER and finally after 7 hours of suffering and crying, a morphne shot was administered which eased the pain considerably. They sent me home is percocets and anti-inflamatory pills. It is the worst pain in the world, death would have brought relief. I was much better the next day.
  • ender
    ender Member Posts: 167
    #7
    pinklady2011 said:

    Neulasta
    I had my first Neulasta on May 9, 2011 the day after my 3rd chemo. I thought I was home free until May 16, 2011. I work up with excrutiating pain in my lower and upper back and chest. Shortness of breath..I felt like I had been run over by a MAC truck over and over again. I went into ER and finally after 7 hours of suffering and crying, a morphne shot was administered which eased the pain considerably. They sent me home is percocets and anti-inflamatory pills. It is the worst pain in the world, death would have brought relief. I was much better the next day.

    SCARY! Thanks for sharing!
    SCARY! Thanks for sharing! I hope you need not go through this with any future Neulasta shots you must endure!

    Eva
  • sparkle1
    sparkle1 Member Posts: 242
    #8
    I too was not given the
    I too was not given the neulasta shot until after my first treatment when my blood count went low. From there I had to take 2 Nupogen shots to get the blood count up. The pain from the nupogen shots were a lot worse for me than the discomfort from the neulasta shot. The doctor gave me a pain pill (forgot the name) to help with the pain. One note to be careful of is that my insurance company (BCBS) considered the nupogen shot a “prescription” and was only going to pay the prescription allowable charge. However they paid for the entire neulasta shot. I had to have the office recode the procedure.
    Sparkle
  • 1acme
    1acme Member Posts: 77
    #9
    ender said:

    Hi Majw!
    Thanks for your
    Hi Majw!

    Thanks for your reply!

    Yes, I was pregnant. A happy and most wanted pregnancy. Unfortunately, the baby misscarried before we had a chance to think about how to manage treatment during pregnancy. I found out about the pregnancy a few weeks after my diagnosis. We were trying to get pregnant, but when I took a test right when I was diagnosed it was negative. Perhaps too soon to register. When I was having all kinds of symptoms from the pregnancy, ,we just attributed it to my cancer diagnosis at first. Then we learned of the pregnancy but the same day learned that I had an empty yolksac and needed the D&C. So I went from a D&C procedure to remove the fetus right in to breast surgery and then surgery to harvest eggs so that we might have children sometime in the future. I guess I did not think of the D&C as part of the cancer treatment when I wrote my profile. While the lost baby hurts, I feel so lucky that I had a chance to harvest the eggs. I learned during this time that my fertility doctor also had another patient, she too 29 years old. She had just been diagnosed with a more advanced breast cancer, had no partner with whom to make embryoes for the future and did not have the luxury of delaying treatment for a few weeks to even harvest eggs.

    Im pretty sure I will be given the Nuelasta shot in a proactive way for my coming chemos. This emergency shot business is a result of me not wanting any drugs I do not absolutely need. My MO respected that and said I would perhaps not need Neulasta. Well, I did :(

    Thanks for listening, and thanks for your reply!

    Eva

    Hi
    I am on Neupogen which
    Hi

    I am on Neupogen which is cousin of Neulasta. It has been explained to me that only difference between those two is that Neulasta is 1 injection and Neupogen is 7 injection daily.

    Yes, I do have some side effects with Neupogen, runny nose/eyes, continues buzzing in my ears, severe pain in joins/bones/muscles especially shoulders, wrist and fingers BUT I am taking REACTINE daily. It kicks in in about 2 hours and pain almost disappeared.

    I am also having severe fatigue and horrible hot flashes over the night (day 5,6,7) but those are more likely Chemo effect.

    I was diagnosed with Triple Negative BC at age 37. My doctor told me that it is a "waste of time" even harvest eggs as with my age chances are next-to-nothing that they will be good. So I had Lumpectomy, Centennial note and 14 Lymphs notes removed and now I am 3rd week in my chemo (total 16 weeks).

    I think that Neulasta/Neupogen shots are important during chemo as they force bone marrow producing more white blood cells to protect you against infections/fevers which could be severe complication during the chemo. I would be worry to go thru chemo without them. Yes they have some side effects as all meds, but I do not want to die because I got banal infection as bladder/kidney or just cold. Remember chemo patient have VERY low immunity.

    I was medicatin free ill my surgery and I do not like to be on meds unless is necessary but I think that this is important.

    Good luck
    Helen
  • ender
    ender Member Posts: 167
    #10
    1acme said:

    Hi
    I am on Neupogen which
    Hi

    I am on Neupogen which is cousin of Neulasta. It has been explained to me that only difference between those two is that Neulasta is 1 injection and Neupogen is 7 injection daily.

    Yes, I do have some side effects with Neupogen, runny nose/eyes, continues buzzing in my ears, severe pain in joins/bones/muscles especially shoulders, wrist and fingers BUT I am taking REACTINE daily. It kicks in in about 2 hours and pain almost disappeared.

    I am also having severe fatigue and horrible hot flashes over the night (day 5,6,7) but those are more likely Chemo effect.

    I was diagnosed with Triple Negative BC at age 37. My doctor told me that it is a "waste of time" even harvest eggs as with my age chances are next-to-nothing that they will be good. So I had Lumpectomy, Centennial note and 14 Lymphs notes removed and now I am 3rd week in my chemo (total 16 weeks).

    I think that Neulasta/Neupogen shots are important during chemo as they force bone marrow producing more white blood cells to protect you against infections/fevers which could be severe complication during the chemo. I would be worry to go thru chemo without them. Yes they have some side effects as all meds, but I do not want to die because I got banal infection as bladder/kidney or just cold. Remember chemo patient have VERY low immunity.

    I was medicatin free ill my surgery and I do not like to be on meds unless is necessary but I think that this is important.

    Good luck
    Helen

    Thanks for your
    Thanks for your replies!

    Helen, Im so sorry to hear that your doctor was so insensitive. Since you are the one paying for any egg harvesting, I think he/she should at least give you the option.

    Yes, I have realized that the Neulasta/Neupogen shots are inevitable. However, my MO said I might do without and that is why we tried. Perhaps she is getting tired having to convince me with a whole bibliography for each drug she gives me. Im a very critical patient.

    Eva
  • poplolly
    poplolly Member Posts: 346
    #11
    Ender--so sorry about the
    Ender--so sorry about the miscarriage. I had the Neulasta shots after each chemo for four weeks. They really didn't make me suffer with joint pain. That is certainly a side effect. But with the shots my blood work was always good, and I didn't get sick during the treatments. Since everyone is different, you may not have the pain one of these ladies had.
  • cahjah75
    cahjah75 Member Posts: 2,631
    #12
    Eva
    I'm sorry you've encountered the low blood count. I was given the Neulasta shot the day after each chemo (6x). I had Taxotere/Cytoxan and my onc ordered the Neulasta. 2 days after each shot I would get achy and sleep for the better part of the next 2 days. I don't know about "emergency" Neulasta shots.
    {{hugs}} Char
  • ender
    ender Member Posts: 167
    #13
    cahjah75 said:

    Eva
    I'm sorry you've encountered the low blood count. I was given the Neulasta shot the day after each chemo (6x). I had Taxotere/Cytoxan and my onc ordered the Neulasta. 2 days after each shot I would get achy and sleep for the better part of the next 2 days. I don't know about "emergency" Neulasta shots.
    {{hugs}} Char

    Thanks for your support
    Thanks for your support girls!

    Today my white count was on it's way up, so no more Neuprogen aka emergency shots for me! Hurray!

    However, I am having bone pain. It is a shooting pain that goes from my head to my butt. I feel like I'm the emperor in "the return of the Jedi" when darth vader shots electricity through him. It is less frequent when I lay still. I tried the claritin but no change. My doctor said that younger patients get worse side effects. I'm not in the ER yet though so I know I am still lucky!

    Eva

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